Well, where do I begin?
Saturday morning at around 4:30am I was awoken and led to my laptop to write about the absolutely perfect day I had had with my two children the day before (READ HERE). I have been trying to get better about writing and recording those amazing, memorable moments more, because days go by and then weeks go by and then months go by and I realize that I can’t remember them like I want to. I, for sure, can’t remember what we may have eaten on any given day, what the kids wore or what specific activities we did, but most importantly, I forget about those very special, precious moments where we break out in laughter over a funny incident over lunch or we play together without a care in the world on the living room floor. Friday was a day I never wanted to forget. It was perfect and special for no reason other than the fact that we were together. There were no errands to run; there were no other people to meet up with; there was no alternate agenda on my day planner. It was just me and my boys…just hanging out. I wanted to have a record of that special day and share the details of it, so that I could put it in my treasure chest of memories from when my kids were little…or perhaps even to recall it when days weren’t so perfect. Little did I know that I was three hours away from one of the most imperfect, utterly terrifying and excruciating days in my entire life!
Only three hours later, at around 7:30am, my sweet, beautiful, little boy, Tate, woke up like any other morning and called out for my husband from his room. My husband went to get him before he woke anyone else up, and they went into the living room to play a puzzle on the floor. My husband noticed he had a runny nose, so he reached over to wipe his it. My son began to jerk his head back and convulse. My husband thought he was joking around and tried to get him to sit still. My son began to tilt his head back and lost all ability to speak. Then he began uttering sounds that made my husband quickly realize that something was seriously wrong. His lips began to smack uncontrollably. His eye lids began to twitch. His body began to shake and stiffen. My husband picked him up and carried him to me to get help. I immediately called 911 and raced through the house to gather our things as if I had been trained from above to know what to do. The paramedics arrived on the scene and by then, my son’s body had begun to relax a bit. He seemed confused and very quiet, but his shaking had stopped. The paramedics decided to go ahead and take him in the ambulance to Dell Children’s Hospital while I followed behind in the car with our younger son.
By the time I arrived at the ER, Tate was in the middle of what they now believe to have been another seizure. This time, the seizure seemed to be isolated on the right side of his body with his right arm jerking and right eye and right side of his mouth twitching. My husband and I were dumbfounded. Throughout all the questioning by doctors and nurses, we were struck by just how healthy and normal our precious boy had been throughout these first four years of his life. He had been sick only a handful of times and by all practical purposes, he was a very healthy, happy little boy with absolutely no reason for us to have ever imagined that he would go through something like this. It was out of the blue and completely unexplainable. Even the medical staff seemed puzzled as they gathered more information about his medical history. He had not recently had immunizations, he had not been sick with a high fever or worse, he had not fallen or done anything to cause trauma to his head that we were aware of. He was just waking up from a good night’s sleep and playing on the floor with his Daddy.
Over the course of four days in the hospital, they ran test after test to try and determine why our little boy suffered from these seizures. On the same day of his series of seizures, he could barely get out an audible word. They ran an EEG to determine his brain function and it came back fairly normal with no reason for them to think that he would have another seizure. The neurologist was quite confident that the MRI would also come back normal, and in my naive mind, I was thinking we’d get to go home within a few hours. Little did I know. They finally got him into an MRI around 5pm that same day, and after hours in the ER just waiting, being by his side and trying to make arrangements for my younger son to be taken care of, Tate was finally admitted to the hospital for an overnight stay. While we waited for the MRI test results to come back, they started him on anticonvulsants (one of the many words I had never used before Saturday) and kept a watchful eye to make sure that he was in stable condition. Communication with Tate was, at best, minimal. He was alert and aware, at some points even smiling, but he was not talking like he normally did.
Once the MRI results came back, the neurologist came to talk to us about the fact that Tate’s MRI showed swelling on the left side of his brain. My head still can’t get around this. I was prepared for them to tell us that he would need to be monitored, but I was not prepared for the MRI to come back irregular or cause anyone concern. Words like “tumor” and “stroke” were being thrown out as my head began to spin. How could this happen? What was going on with our boy?
Because of the swelling on the brain, the neurological team ordered more MRIs to be taken in order to get a better picture and attempt to rule out some serious possibilities. After his initial MRI on Saturday evening, he was then fully sedated again on Sunday for an MRA and spinal tap and then again on Monday for an MRV. After all this, it was finally determined that he did not have a stroke of any kind and he did not have one of the tested viral infections they look for. In order to take every precaution, they had immediately started him on two antibiotics and an antiviral, but they took him off all of that once the spinal tap came back negative.
As I write this, we are back home and back to our normal life. Over a week has passed since this horrible morning when the seizures began. There are still no answers as to what caused the seizures and what, if anything, could be behind the swelling. As of now, we are scheduled to have another MRI in six weeks. By then, I would imagine the swelling will have subsided and they will be able to get a clearer picture of what is going on. That is our hope, at least.
In the midst of this storm, we have had countless people praying for Tate and for us. We have been blessed by hospital visitors, gifts and meals prepared by those who care. I am so incredibly grateful for the love and support we have received. It has helped ease the fear and take our minds off of the situation at hand. Throughout this entire time, we have felt God’s hand on us and on Tate. We know that he is in control and we have relinquished our own control and anxiety over to him again and again.
Since our return home, Tate has been back to his lively, happy self. He has been playing with his toys, running, riding his scooter and laughing. He has been talking a mile a minute and for all practical purposes, he does not even look like he has been through anything. Truthfully, I think Thomas and I have been hit the hardest by this, and today, all I feel is devastation and exhaustion. In the back of our minds, we as mothers always know there is a possibility that something could happen to our children. We even try to prepare ourselves for it without becoming too paranoid or too worried. But when something does happen, it shakes us to the core and leaves a big hole in our hearts. Right now, there’s a hole where my security once was. Right now, there is an overwhelming, crippling fear that wasn’t there before. As strong and faithful as I want to be, I cannot lie and say that this hasn’t taken ahold of me. Regardless of the outcome of the follow-up MRI in six weeks, I will forever be changed by this occurrence. No matter how healthy my child is and how good his follow-up reports may be, I feel like I will forever be frightened about his well-being and perhaps wonder if we will ever have to go through the horror we went through a week ago.
There are no words that can explain this feeling as a parent. From the time a child is formed within your womb, you worry about his/her little body. You breathe a sigh of relief when you leave those OB visits with a good report. You smile with tears in your eyes as you hear a healthy, beating heart. When the child is finally born, you sit beside his bed at night making sure he’s breathing. You hesitate to sleep for fear that you might miss a plea for help. As time goes by, your confidence in your child’s well-being grows. You let go little by little and don’t need to be right beside your child, watching his every move anymore. You slowly began leaving him with friends or family to go out for dinner with your husband. You kiss him goodbye as he goes off to school. You allow him to play in another room or even outside by himself, because you know he’ll be OK. That initial fear you had when he was born his, for the most part, gone. You are confident that he is doing fine on his own — with or without your help.
This is where we were last week. We were confident in our son’s well-being. As I stated before, he had never had any health issues or causes for our concern. He was growing up and doing just fine! Then this happened on Saturday and changed everything. Now, I feel as if we’re back at that place we were in when he was only days old. We are keeping a watchful eye on him and worried about his every move. Our confidence has been shaken, and I honestly don’t know how to get it back.
Dear Lord,
You know our thoughts before we even think them. You know what is on our hearts without our being able to verbalize exactly how we feel. I am filled with grief today even though my son is happy and seemingly healthy. I am so scared by the what-ifs and thrown off guard by this chain of events that has literally flipped our world upside down. The day before this happened, I was relishing in the moment and enjoying just being with my two little boys. Now, just a little over a week later, I am completely thrown off and feel as though I don’t know what hit me. How does one bounce back from such a life-altering event? How does one handle the ever-present threat of something happening to her children?
This past week has taught me that there are no certainties in life. We can think we have healthy children, a stable job, a lasting marriage, good tires on our car, and in just moments, we can find ourselves on an ambulance heading to a children’s hospital, struggling with work, fighting with our spouses and getting a flat tire.
Help me, Lord, to cherish every moment and cast all of my care and fear on you. Help me not to be anxious and worried. Help me to learn from this and live my life to the fullest and glorify you. Help me not to be paralyzed by fear, but to live in you and your hope alone.
Amen
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